My cancer diagnosis forced a re-evaluation and refining of my values.
At the time of diagnosis, I was on day 6 of my hospital stay. It was also in the middle of another COVID outbreak - so we were allowed one visitor per day between 1-5pm. My brother was at my house when the oncologist came into the room to tell me the news. He and my partner were on speaker when he explained everything.
My oncologist gave a master class in how to break dire news without freaking out the patient. He was clear about what we were dealing with - providing hope and a potential path forward, but not candy-coating the situation.
As I stared at the list of treatment options, none of which looked fun or relaxing, I found myself asking "What experience do I want to have during all of this? What is most important to me right now?"
My brother visited soon after. This is when I was grateful that he went into IT Sales Guy mode and took notes, because mine made no sense.
I shared the treatment option paper with him. After staring at the document for a bit, he asked what I wanted to do.
The main decision-making guideline I made for this journey - Quality of life over quantity of life.
Quality of life, to me, means being able to maintain my ability to move around independently and not spend my entire remaining time on this mortal coil going between medical appointments.
I want to have time and energy to pursue hobbies outside of being a professional cancer patient. I want to spend time with friends and family without anyone having to wipe my butt for me.
So far, so good. Once we got past the chemo phase of the journey and found a medication that actually knocked back the cancer, I've been able to live a quality life. I'm studying painting, travelling again, practicing yoga, getting outside, and spending time with friends and family without anyone wiping my butt.
My primary goal for 2023 - maintain this quality of life and strengthen myself for the next phase of the journey.
As I talked everything through with my brother, I had also decided that it was important for Ryan and me to stay in familiar territory - near our immediate family and support networks. At least for this first year as we got our bearings and adjusted to this wildly new life neither of us asked for.
Ryan and I also realized that we found an absolute gem in the oncologist we met at the hospital. We decided to stay with him.
This has proven to be a good choice. He has been willing to explain anything that required explanation, do research and contact colleagues when he wasn't sure about how best to move forward, work with the insurance companies (both disability and health) to give me access to resources, and call me at 5am to tell me to go to the ER when I wasn't noticing anything wrong.
We are going to have him quarterback my treatment for as long as is feasible.
As I reflect on the last year, and on how wildly my life has changed since then, I'm happy with how my decision-making guardrails have worked.
Being able to define what quality of life looks like for me has helped me put together a year that I'm proud of - despite lymphoma and the administrative detritus around health care.
I'm enjoying the way I spend my time most days (calls to the insurance companies and health care facilities' billing team notwithstanding).
I've met amazing people, reconnected with friends from my past, and strengthened key current relationships.
And I find myself looking forward to this oasis part of the journey.
I don't know how long the oasis will last, but I intend to enjoy every moment I can.